National Eosinophilic Awareness Week

Try to imagine your diet without dairy products. Then take out all the foods that contain soy. Now remove anything that contains corn or eggs. Last but not least, don’t eat anything that contains chocolate. Not much left, is there?

My youngest daughter, who is eight, has Eosinophilic Esophagitis. EE is an allergic inflammatory reaction of the esophagus. I generally describe it to people as being a combination of food allergies and reflux. When the Youngest eats certain foods, such as anything that contains dairy, soy, corn, eggs, or chocolate, they cause her to have pain in her throat and stomach. Many times the reaction is so bad that she lays on the ground, curled up in a ball, moaning in pain. This isn’t an isolated event.  It’s part of her daily routine.  With a limited diet and pain medication, we’ve been able to make her life fairly normal. Maybe not every person’s kind of normal, but one that works for her and for us.

We’ve been fairly lucky so far. We have access to excellent doctors. We live in an area where foods both typical and exotic are easy to find. We like to cook – my Bestest claims he can make crepes out of air, water, and duct tape. I am a stay-at-home mom and have time not only to cook and shop at several stores (you never can find everything you need at just one), but to stay at home with her when she’s feeling badly and to take her to the numerous doctors appointments needed to treat her EE. We have good health insurance that covers much of the cost of her treatment. We also have a good enough income to be able to afford the food that she needs and can safely eat. A pain-free diet costs more.

Like many medical conditions, EE causes a lifestyle change. Making dinner, or any other meal for that matter, takes a lot of effort and planning. I can’t just follow a meal plan in a magazine or casually pick something up from the store. Labels must be read and recipes often need to be tweaked or disregarded entirely. Going out for a meal? Good luck with that. When the Youngest is in dietary lock down (her strictest phase), there’s very little she can eat. At one point, we tried going to lunch at McDonald’s. The only things she could safely eat were a hamburger (no bun, ketchup, pickle, etc.), apples (no dip), and either water or apple juice. Most of the menu was off-limits to her. We were able to go there with some confidence because we could look at the food’s ingredients ahead of time and determine what was safe for her to eat. We don’t have that luxury in most restaurants.

Again, we are fairly lucky. Through a process of trial and error, we’ve determined that she can occasionally cheat on her diet and still have a clean endoscopy. That allows us to let her have treats – a meal out, her classmate’s birthday cupcake, that special dish she’s been craving – but not too often, and not too much, or her endoscopy comes back showing eosinophils in her esophagus, which means there is damage occurring to her insides, meaning that she’s sick – something that no parent ever wants their child to be.

Too many children with EE suffer much more than she does. Some can’t eat food at all. They have to receive their nutrition through feeding tubes. Others have an extremely limited diet. If you see a child who will only eat chicken and rice, perhaps there’s a reason for that. At one point, the Youngest was also avoiding food containing wheat and potatoes, as well as watermelon (which she detests anyway). She had eliminated EIGHT foods, along with anything that contained them, from her diet. There wasn’t much left in her diet, and yet there was so much more that other kids who have EE can eat.

For these and many more reasons, May 16-22 is National Eosinophilic Awareness Week. The American Partnership for Eosinophilic Disorders (APFED) is trying to raise awareness of EE and other related conditions. I wholeheartedly support their efforts except for promoting the DumDums. We’ve also been doing Feingold for years. Food dyes are evil. If you don’t believe me, give the Eldest or the Youngest something containing food dyes. Insta-Bitch.

If I had to choose one of my children to have this condition, it would be the Youngest. She’s tough, strong, spirited, and resilient. She’s so far been able to shake off any lingering angst that this condition could instill in her. Blood draws? Easy. Having her back covered with little bits of food for patch testing? Fun! Endoscopies are another opportunity to earn a Webkinz or other treat. Doctors appointments give her the chance to commune with the delightful Miss Denise and the rest of the team. She really does always look on the bright side of life. With some research and effective treatment, hopefully more people with Eosinophilic Disorders will have the same opportunity.

Patch Testing
Endoscopy prep - Taking Matters into Her own hands
Everyone's Ready!
Post-Endoscopy Nap
The Face of Eosinophilic Esophagitis - Isn't she cute?

Life is about 10% how you make it, and 90% how you take it. She takes it exceptionally well. <3

Hip 365 – Week 2

More adventures in my life, chronicled with my iPhone and the Hipstamatic app. You know, a lot of people are of the opinion that photos should be a certain kind of interesting.  They think that taking pictures of your food or of other things that aren’t interesting to them should not be done. To them I say this:  It’s my blog, my pictures, and my life. Sometimes I look at my picture of the day and wonder why my life doesn’t produce more interesting shots.  But that’s the thing – it’s my life.  Sometimes its exciting, sometimes its boring – ebb and flow. Sometimes food is exiting to me.  Lord knows, my cat often is.  The point is that these photos chronicle a year in my life, not someone else’s.  Don’t like it?  Don’t read it.


357 – A perfect day for a nap in Mom & Dad’s bed.

The older they get, the less likely they are to nap, period.  Which is a shame, really, because some days are just perfect for a nap.  When that nap takes place in a warm bed, cuddled between flannel sheets, and under a giant fluffy duvet, then how can you resist?  She certainly didn’t.  I should’ve suspected something was up at the time, but ignorance is bliss – much like a mid-day, weekend nap.

356 – Still small enough to fit in the fun shopping cart.

Nearly every time we go to the supermarket, she begs to ride in one of the car carts.  She’s getting too old for it, but apparently not too big.  If you look closely, you can see the huge bags under her eyes.  It was a rough night capped off with an early morning visit to the pediatrician.  Turns out she has strep.

355 – At the pediatrician’s office. Again.

When we got back from the doctor’s office yesterday, I asked the older two how they felt.  Strep tends to spread like wildfire around here.  No issues – then at least.  By the next morning, the eldest was moaning in pain and discomfort.  Back to the pediatrician’s office for another positive strep test.  The Son never did get it.  I guess there’s some advantage to his preference for solitude.

354 – 15 minutes before school ends and already a long line at kiss and ride. What are we all doing here so early?

Although the younger two technically could take the bus to school, the bus stop is halfway between our house and the school.  Since the school’s less than a mile away, it seems slightly ridiculous to wait at the bus stop every day.  Instead, I wait in line at the kiss-and-ride entrance at their schools.  Not that this option is any less ridiculous.  The line to pick up your kids starts early and fills up fast.  I’ve seen people in line over 30 minutes before school ends.  Craziness.  Even on this day, the line was long when I got there 15 minutes before school ended.  Why do we all like to hang around in our cars for so long?

353 – “A snuggle is good for a Weechin’s life.”

The youngest, still not feeling well, climbed in my lap for a long snuggle.  The quote is her own.  Her father called her Weechin (wee children) after something a friend once said.  It’s a fitting nickname.  She is quite the petite child.

352 – Self portrait, shorter hair

Finally got everyone back to school and had a moment to myself.  What to do?  Get a haircut, of course.  Having my hair straight is a luxury.  Usually it’s quite wavy.  I had to take a picture to celebrate the occasion.

351 – Ready to slay the boys at her first dance.

The eldest is enrolled in Cotillion classes this year.  The National League of Junior Cotillions sponsors classes at the local country club. She, along with several friends, goes once a month to learn basic social graces, dance steps, and how to interact politely with kids and adults.  It’s a great opportunity to socialize with kids her age outside of school in a civilized environment.  As part of the  course, two balls are held.  The Winter Ball was her first opportunity in a while to dress up.  We’d gone to get her hair cut and styled.  Her hair, like mine, is very wavy, so having straight hair is a rarity.  The salon had a complimentary make-up artist that day, so the Eldest also had her first professional make-up application.  Such excitement for her, but a little scary for her father.  While we were taking pictures, he handed her one of his swords to remind her just how to handle the boys.

Hip365 – Week 1

In a valiant attempt to catch up, I’m going to post all of my 365 photos from earlier this year in a week-by-week format. Maybe then I’ll be able to keep current. Ha!

One of the challenging things about taking on this project is that I’ve had to come up with ideas on a daily basis. Yeah, that’s kind of the point, but going into the project I didn’t realize how much it would affect the way I look at my life.

364 – Country roads, take me home…

Heading back from West Virginia to our home in Virginia, we always have time to appreciate the lovely scenery. This is partly because the police force in Wardensville, WV is notorious for insisting that the speed limit not be exceeded. They even ticketed their own congressman for going slightly over 25. Nothing like regular enforcement to ensure compliance.

363 – It must be January again.

If this isn’t a typical slice of my life, then I don’t know what is. Time to try sticking with a diet and exercise plan, yet again. After action report – I stuck with it a few days before coming down with hives from an unknown source. Between the itchiness and Benadryl-induced stupor, I wasn’t good for anything for a few more days. I never did get back to exercising regularly. Maybe that should be my new goal, now that I’ve actually managed to stick with another activity (pictures!) for more than three weeks and made it become a habit.

362 – If it’s Tuesday, it must be time to stuff folders.

Every Tuesday during the school years, students at my younger two children’s schools send home a folder containing completed homework, school information, and other announcements (the eldest’s school sends them home on Thursday, which means I can’t even refer to them as ‘Tuesday folders’ safely anymore). I volunteered to stuff the folders in the youngest’s classroom, thus fulfilling the need to occasionally volunteer in the classroom. Otherwise,I don’t spend too much time in their schools. There’s a reason I didn’t become a teacher.

361 – Home sick, but still doing his reading homework.

‘Sick’ is technically correct. Really, the school sent him home because he’d thrown up. He’d thrown up because he didn’t eat enough before taking his meds. Every morning, the Son takes Strattera and Concerta. He has to eat a full breakfast before taking them, both to ensure he gets some food in before the medication affects his appetite and to ensure that he doesn’t throw up. Guess breakfast didn’t go so well that morning, but at least he had a nice day at home afterwards.

360 – EEG

We often refer to The Youngest’s membership in the “Disease of the Month Club.” We joke about it, but really she has a bigger medical file than the rest of us combined. This day, she was getting a sleep-deprived EEG to check for seizure activity. Her teacher had noticed some seizure-like activity a couple of months before and the neurologist ordered the test. In preparation for the test, she hadn’t been allowed more than four hours of sleep. Later on, she and I took a well-deserved nap. In this picture, she’s trying to sleep but had to wait until the approved time during the test until we’d let her drift off.

359 – Either a dead body or a stylish homeless person. Neither option makes me want to shop in this store.

You see the strangest things at the mall. I’m not a fashionista by any stretch of anyone’s imagination, but I think this window display was a little odder than most. Torsos and appendages sticking out of boxes – what were they trying to advertise, anyway? If you lived in a box, you could afford to buy this outfit? Weird.

358 – Let it snow! (but not too much – this is Virginia)

Oh, the South. Not a place that snow should ever touch. Admittedly, we have a better chance of dealing with it now that we’ve had so many big storms recently. Coming from New Jersey, where it can snow one foot at night and the streets are clear and dry the next day, I find the whole process a bit disheartening. But, the plow drivers here have finally figured out that the snowplow blade can touch the pavement, instead of hovering several inches above it. Much more effective street clearing that way. There’s hope yet, but snow should still stay up North. This was just the right amount of snow for Virginia – a pretty dusting that melted by mid-morning.

The Gift of Autism

It’s in the letting go of expectations that we find the freedom to truly be.

The expectations. Oh, the plans I had for my kids. I’m not even sure what they were anymore. Time has a way of blurring our memories. That’s good, because reality has a way of changing our plans. It’s hard to be disappointed that things didn’t turn out the way you planned if you can’t remember what you planned in the first place.

Our kids and their futures go from a concept to a fact faster than you ever realize it could happen. One minute you’re dreaming of having kids and the next they’re walking out the door, heading off to pursue their own plans. That’s just how life goes. As much as we try to control it, time has a mind of its own. So, too, do our children. So why does it come as a surprise that we can’t control them either?

I’m not even going to get into the concept of controlling your teenagers. I don’t have one yet. Mine are 8, 10, and 12. Even at this young age they’ve proven that, as much as I’d like to control their destiny, I can only do so much. The rest is up to them.

None of my kids has done so much to reinforce this concept as The Son. He was our second-born child and our first-born (and only) boy. So, boys. You probably have some sort of preconceived notion of how boys are supposed to be. Certainly we did. He’d be a rough-and-tumble type, play baseball or soccer, be a Boy Scout, and maybe someday join the armed forces. We nurtured those dreams for the first few years, but even then he seemed so different from other boys. Eventually we found out he that he hates sports, doesn’t like to participate in group activities, and doesn’t like being outdoors because there are bugs outside. We also found out that he has High-Functioning Autism and ADHD.

Imagine taking all of your plans and expectations, and realizing that most of them are no longer an option. Military service is obviously out. We could force the sports issue, but he hates it. Why try to make the kid unhappy? He doesn’t like to spend much time with people, so Boy Scouts isn’t a great option either.

What’s left? Him, just being himself, and us trying to figure out how to help him be the best person he can be. Instead of trying to get him to meet our expectations of what he should be, we’re helping him to be successful as himself – and oh, what a self he has. He’s more self-confident than most people I know. He’s content to let his freak flag fly. The other day, as I was picking him up from school, I noticed that he was wearing his ball cap on top of the hood of his jacket. It looked a little silly to me, so as he got in the car I mentioned to him that it was supposed to go on his head. He told me that he knew, but that’s the way he wanted to wear it. Good enough for me, but not good enough for his younger sister, who also remarked upon it when we picked her up at her school. He told her that he wore his hat that way because it looked weird and that’s the way he liked it. “Cool!” she said, in her typically enthusiastic way. It hit me then – her approach to him went from derogatory to celebratory just because he displayed some confidence in his approach to life. Why can’t we all be that brave and strong?

Most fourth graders want to fit in. Mine’s ok with standing out and being his own person. I can attribute this directly to his autism. He honestly doesn’t care what other people think of him. He’s empathetic towards others, but he’s self-possessed enough to not really care about their feelings towards him.

This gift of his has helped me be a better parent. I don’t try to make the kids be how I want them to be. I try to let them be the best person they can be.They only get one shot at their life. It should be theirs to live for themselves, not to live for what I want. If I don’t have expectations about how they will be, I’ll never be disappointed that they didn’t turn out that way. That’ll just leave me more time to love them for themselves, which is what a parent should do.

The Difference a Smile Makes

I left kiss-and-ride this morning feeling a bit more positive about the whole experience.  It wasn’t necessarily a better experience than yesterday’s – drier, to be sure, but still the same hot mess that kiss-and-ride will always be.  No, the thing that made the morning drop-off just a little better was saying hi to Mrs. L.  She’s worked with all of my kids, but especially with the Son and the Youngest.  She’s made their lives so much easier and we always know they’re safe when they are with her.

She always has a smile for us, but today she looked a little flustered too.  She confessed that she drew a blank for a moment and forgot my last name.  I laughed and told her that her brain was probobly just frozen from standing out in the cold and that we loved her always.  It was a funny exchange that made the morning seem a bit brighter.  Thank goodness for people who make us smile and laugh.  It makes such a difference in a day.

They Said There’ll Be Peace On Earth

The Horror!  Five days left to go in the month and I miss a day.  So much for blogging every day during the National Blog Posting Month.  Maybe I’ll post twice today to make up for it.

I wish I could say I forgot because I was too busy scoring great deals on Black Friday.  Wait, no I don’t.  I hate crowds – why on earth would I want to deal with that many people all at once?  I’m not always convinced the deals are that great, really, and the whole experience seems to bring out the worst in some people.

I was reading an article on this morning that described the troubles several people had during their Black Friday shopping trips.  There’s one woman who was arrested for cutting in line so she could score a deal.  Her excuse? 

” “I just wanted to get my daughter the toy that she wanted for Christmas, which probably won’t be there when I go today,” Lanessa L. Lattimore, 21, told CNN.”

What, like the rest of people in line were just there for their own amusement?  Pay your dues like the rest of us, Lanessa.  If you want the deal, work for it.  If you’re not willing to work for it, then stay home.   And for goodness’ sake, don’t threaten to kill the people behind you in line when they complain about you cutting in, then feign surprise when you get arrested.  Ignorant twit.

No, I’m glad I wasn’t dealing with Black Friday lines.  Instead, I was dealing with (thankfully short) lines first at the pediatrician’s office, then at the radiology lab.  The Youngest was sporting a 104.3 fever on Thanksgiving night.  In combination with bad pain in her side, it almost sent us to the ER.  A dose of Tylenol brought enough relief that we held out for sick clinic on Friday morning, where blood work results led the doctor to give her a shot of Rocephin in each thigh and then send her for chest x-ray.  She has to go in for repeat blood work this morning.  Her fever was down last night, though, so hopefully she’s on the mend.

All of the Turkey Day sickness made me think of one of my favorite Christmas songs, “I Believe in Father Christmas” by Emerson, Lake, and Palmer.  The song ends with “Be it Heaven or Hell – the Christmas we get we deserve.”

It surely wasn’t heaven, nor was it hell, but I wonder what we did to get that type of Thanksgiving?  Hopefully Christmas is a bit calmer.  Still, it was nice to have an excuse to spend some mostly quiet time together.  Now, if we can just get rid of all the coughing….

I’m Not Proud…Or Tired

So here it is – the day before Thanksgiving, the official start to the holiday season. Time to get in our car, drive to Grandma and Grandpa’s House in the Woods, and enjoy a delicious feast.

One out of three ain’t bad, right?

No holiday is truly complete without a sick child. The Youngest is taking the hit for the family this time. She started with a sore throat, then added a cough and runny nose, and finally a high fever. She then proceeded to erase any doubt of whether or not we’d make the trip by vomiting. If at all possible, I try not to have puking kids in my car. It’s bad enough that they sometimes puke en route; taking an actively puking child is not going to happen. All of the talk of going seemed moot regardless, since my Bestest has followed up pneumonia with an allergic reaction to his antibiotics. He’s a mess too.

So instead of going over the river and through the woods to grandmother’s house, we’re going to hang out at home. It’s not the day we’d planned, but one thing will stay on schedule: the annual playing of Arlo Guthrie’s “Alice’s Restaurant.”

Now I Lay Me Down (Not?) to Sleep

My Bestest has been taking extra good care of me for the past several weeks/months, both pre- and post-plica removal surgery.  He’s done most of the grocery shopping, school pick-ups and drop-offs, a lot of the cooking, and all of the heavy lifting.  Now that my knee is almost healed at three weeks after surgery, it’s his turn to be sick.  Poor thing has pneumonia.

I’m grateful the universe has at least provided us with good timing.  I just hope the rest of us don’t get sick too.  The Youngest seems a bit sniffly already, which is significant.  She also has a tummy ache, which may or may not be.  Such is life with Eosinophilic Esophagitis – maybe she’s getting sick or maybe she’s just reacting to something she ate.  Time will tell.

It’s looking like the elder two will outlast the rest of us.  My Bestest is exhausted, I’ve been up since 3:30 am (oh, hey there early menopause!), and the Youngest is crashing.  Hopefully a few good threats will get them through the night with few disturbances.  Otherwise, I’m hearkening back to our theme song from when they were little – the Barenaked Ladies’ “Who Needs Sleep?”

When I’m Stuck With a Day

I think I’m finally approaching Zen Parenting. I doubt I’ll ever be fully zen – I’m way to much of a stress puppy for that – but I am finally learning to occasionally just roll my eyes and keep going after I get bad news instead freaking out and freezing. Yesterday’s episode was yet another of the Youngest’s efforts to keep her health status as “interesting.”

We’ve long since given up trying to list all of her illnesses, except on medical history forms. Even then, it’s a challenge to keep them all straight. While she was in the doctor’s office yesterday, I commented to the nurse that the best part of their computer system is that there’s finally space to list all of the conditions she has. They ran out of room at the top of her paper chart a few years back; she’s 8 now. I guess most kids have only a few, if any, items of concern or note. She’s certainly picking up the slack.

So yesterday, when I got a call from her teacher detailing an episode of what we all think were two seizures, I just took notes, called the doctor, made an appointment, and kept going. No freaking. Just a call to my Bestest to keep him in the loop. Lesser things would wait ’til the end of the workday, but this one was important. Besides, he was able to leave work early so I could take the youngest to the doctor on her own. Oh, and I thanked her teacher for being observant. I love her teacher.

In the past, I would’ve freaked out a lot more. Not that it would’ve helped any, but it’s a natural reaction. I can’t decide if I’m becoming numb to all of this or if I’m just treating this like a business transaction. It’s just one of the things that we’ve dealt with early and often since the Youngest was born. She shows no signs of slowing down. Thank goodness nothing has been very serious. Concerning, yes. Oh, heck yes. But nothing life-threatening and that’s what’s important.

The Youngest is a remarkably resiliant child. After all of the IVs, injections, and blood tests she’s had, she’s no longer afraid of needles. Last year, while they were getting their flu shots, the Son was nervous. The Youngest just looked at him and said, “Let me show you how it’s done!” She walked past him, rolled up her sleeve, presented her arm to the nurse, and took the shot without a wince. After that performance, there was nothing left for the other two than to emulate her. I don’t know if she really wasn’t scared or was just acting like she’s not, and I don’t care. She’s dealing with it. I’m very proud of her.

The Reigning Queen of Pink is her nickname, and I can’t think of a song that represents her better than “Tomorrow” from Annie. No matter how bad things are, nor how bad her mood, you can always count on her to bounce back with a smile. Sometimes (ok, often) I feel badly that she’s dealing with all of this. Then I think that maybe she’s the one best suited to deal with it. She’s spunky, just like Annie. Here’s hoping she finds her own ‘happily ever after’ someday.

Laugh at Yesterday

So I forgot to mention – and maybe by Day 6 I don’t need to anymore – that this month’s edition of NaBloPoMo posts are all inspired by songs. Music is inspirational. It makes you think, feel, dance, SING, and so many other things. I couldn’t go a day without music. Even if it’s not playing out loud, there are always songs in my head.

What I’m listening to depends largely on my mood, unless other forces intrude. With five people in the house and even more outside in the world, that’s a pretty large influence. The music in my head is usually mine. The music I play for myself on my headphones is mine too. As a mother of three, “mine” is an interesting concept. Now that they’re getting older, I definitely have more “me” time. When they were younger, “me” time was a precious commodity. Sometimes the only way I got some peace and quiet was to put everyone in time out, including me. Being on my own, in my own room? Priceless.

Even now, I sometimes tell the kids to go up and “clean their rooms” or whatever they want to call it, just so they get to be in a place by themselves, where their thoughts can roam untethered. The Eldest likes to play her music and dance around. The Youngest likes to play with her dolls or read a book. The Son likes to pace back and forth and tell himself stories. In short, they do whatever they want to do. The rest of the house is designated as a public area – you have to deal with each other’s behaviors. In your room, you are free to do your dreaming and your scheming, your crying and your sighing. “In My Room,” by the Beach Boys, is the perfect soundtrack – that is, if you want it to be. Your room, your choice.